When you are diagnosed with a terminal illness, your first thought is likely death. Among the myriad other things that run through your mind, however, is probably holding onto what matters most to you in life, whether that means being around for a loved one’s milestones, maintaining your physical appearance or being able to work.
In recent years, end-of-life care in the United States has garnered significant attention, mostly because of cost concerns and the overall impact those costs can have on the health care system. But underlying these financial questions is the broader philosophical consideration of choosing end-of-life treatment options that match your goals and values.
Linda House, president of the District of Columbia-based Cancer Support Community, an advocacy and support group for cancer patients, recalls working with a pianist who had terminal cancer and was intent on playing piano until the end of her life. For that reason, the pianist decided against taking a potentially life-extending treatment that can cause neuropathy, or numbness, in the fingertips. That same thinking caused another patient House worked with, a veterinarian, to forego that treatment.
“He wanted to continue to work with animals, and the way he examines them is by touching them,” House says, adding that upon diagnosis, he told his treatment team: “Whatever it is that you give me can’t ruin that communication vehicle.”
Preference for Quality of Life vs. Longevity
The Cancer Support Community has a program designed to address patients’ most important needs as they make treatment decisions, House says. Called "Open to Options," the program counsels newly diagnosed cancer patients in making treatment decisions that suit them best. That program encourages patients to do four key things, which can benefit those who are and aren't terminally ill:
- Learn about their cancer and treatment options as much as possible
- Bring a family member or friend along to appointments to take notes
- Talk about treatment decisions with someone they trust
- Consult treatment guidelines and decision-making tools from cancer organizations such as the American Cancer Society, the American Society of Clinical Oncology and the National Comprehensive Care Network
House says much of the decision-making boils down to defining the value of cancer care – in other words, determining the value of treatment, especially if it causes bad side effects and isn't likely to prolong survival. House recalls one patient who remarked that: “Being treated for cancer is like shopping in a boutique without price tags,” since getting a clear understanding of the risks versus benefits of a given therapy can be difficult.
But one thing is clear from both studies and anecdotal interactions with patients, House says: Many patients with terminal diagnoses will forego life-extending therapies to preserve their quality of life. Although the medical culture has been designed to shoot for survival at all costs, “There are patients whose long-term goal is to feel good and attend a key event in the family,” such as a wedding or the birth of a child, House adds. “Instead of just living for three years, they might come back and say, ‘I want to live well for six months, until that child comes,’” House continues. “That’s a very real desire for people – ‘I want to live well, even if it’s for a shortened period of time.’”
Tough Conversations for Doctors – and Patients
But patients aren't always given the opportunity to express their wishes or think about their care in those terms. Some studies suggest that these types of conversations are tough for health professionals to have with patients, House says, adding that even when they do occur, patients may not discern what is being conveyed. “The patient-physician interaction has been filmed and analyzed, and what the patient is told is not always what the patient hears,” House says.
Which may boil down to phrasing. “When the physician tells the patient about response rate," which refers to the number of patients who responded to a particular therapy divided by the total number of patients, "what translates in the patient’s mind is cure," House explains. "The terms-and-hope equation may not always match up in that communication."
Doctors are faced with maintaining a difficult balance between neither providing false hope nor removing hope. Whatever the outcome of those conversations, however, when they do take place, terminally ill patients are better able to make end-of-life choices that favor their quality of life, according to researchers at the Dana-Farber Cancer Institute in Boston.
Jennifer Mack, a pediatric oncologist and researcher at Dana-Farber, has conducted studies showing that patients who talk to doctors about aggressive end-of-life care at least one month before they die are less likely to choose aggressive end-of-life therapy, and more likely to opt for earlier hospice care when told their prognosis.
Mack says she typically decides when to engage in these conversations based on how medically urgent the situation is, as well as the patient’s comfort level. She starts by asking patients to explore what’s most important to them, as well as what they are most worried about.
Recommended article: Chomsky: We Are All – Fill in the Blank.
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